Living with Multiple System Atrophy. A life limiting, neurological brain disease.

Our journey with MSA…

on May 10, 2013

Our journey with MSA has been shared many times in the last year and now a short documentary has been made by the Guardian Newspaper and Zurich Insurance, it’s currently being shown on the Guardian website and I’m thrilled that the people involved made such a beautiful moving film, something that will last forever.

As a family we worry we are in people’s faces all the times, how many times can you ask someone for something, we have been so overwhelmed by the kindness of family, friends and complete strangers, some of whom (hairy) went as far as getting waxed all for a good cause, thank you to Kevin and everyone else who attended! Special thanks to my amazing sister who says very little verbally, but shows it all in her beautiful eyes.

andy and kevin

We have had more equipment delivered this week, different medications and plans, all the things that take your smile away for a short moment because your reminded of what’s to come. Rhanna is now on exam leave, no matter what happens with her exams we will be forever proud of our beautiful girl who shines from the inside out!

As part of Andy’s 50th birthday celebrations there is a group of them doing adventure tubing, Andy, Rhanna, my mum, Anna, Iain, Abi, Brian, Charlie and maybe Rhanna’s friend Hazel…. Good luck to them all.The rest of us will be watching from afar warm and cosy!!
Please feel free to make a donation if you have a look at ‘nae limits’ website and adventure tubing I’m sure you’ll agree they deserve a little recognition!

I’m becoming more tired, my body is getting weaker ….. I wrote this poem last night, well actually, very early this morning, Friday 10th May at 2.18am.

MSA….. Who?
You never stop to wonder
To ponder on your time
You just go along, thinking that it’s mine
Than something comes along, knocks you of your stride
That something is named MSA, it robs you of your pride
There are a million reasons for a death
Old age always seemed so much more realistic
But given that MSA doesn’t have a cure
It seems I’m to be another cruel statistic
The end of you, the end of me
The endless emptiness I cant see
Those minutes that are ticking by
The moments you see passing by
Knowing that your going to die
You can close your eyes, choose not to see
The end of you, the end of me
Somewhere out there is something pure
A dream, a vision to find a cure
You mustn’t give up, never lose hope
Without it you will never cope

There’s not much time to live your lives
So live them full and with a smile
You can close your eyes
And you will see
The happiness of me
The moments so clear for just a while
Where you and i share the brightest smile
I believe in my heart what I say will come true
A cure will be found for MSA
Broken hearts will be mended the battle be won
And MSA……well that be done.

Samantha Crawford
MSA Sufferer….. Actually scrub that….. MSA FIGHTER

Have you ever watched children
On a merry-go-round
Or listened to the rain
Hitting on the ground
Have you followed a butterfly’s beautiful flight
Or gazed at the moon in the fading night?

You better slow down
Don’t move so fast
Time is short
The dance won’t last.

When you ask, How are you
Do you stop to hear the reply
When your family hear MSA
Do you lie in your bed and wonder why

You better slow down
Don’t move so fast
Time is short.
The dance won’t last.

When you are running
so fast to get somewhere
You miss half the fun of getting there.
You don’t see the old couple holding hands
Been together forever, 50 years not apart
But then it hurts then when the understanding starts
Why would MSA hit your family
Then you worry and hurry through your day

It is like an unopened gift…..
Spend time with your loved ones
You better slow down
Don’t move so fast
Make memories to last
Forget for a moment MSA
And live so happy for that day.

Rhanna with her friends Sam, Rhanna and Andy Sam's mum and Aunty Isobel Rhanna and friends

5 responses to “Our journey with MSA…

  1. Jacqui says:

    What a beautiful film full of joy and sorrow. I am so sorry to see another beautiful person and a wonderful family have to suffer this go awful disease. I lost my mother to msa last year and she was an incredible person who fought everyday to retain her dignity, independence, beauty and humour despite it all. You are a strong family and your love for ach other is clear, this will take you through. If you ever need anyone else to talk to then please contact me, happy to be a sounding board for anything. Much love to you all. X

  2. Darling Samantha, what more is there to say? I will never forget your brave smile for the rest of my life, when times get tough I will remember you and your dear family and what you have done in your time to aid me and Geoff in our struggle to fight on, I am only so sorry that you are so young to be going through this but rest assured that even though your life will be cut far too short your shining aura and struggle against all the odds will remain with me forever. I have I’m sure found a friend for life in your mum!! She will never be rid of me so hope she realises that!! Your future is assured Missy Samantha and be assured that Rhanna and Andy will be okay, love never dies, remember there are three things that last according to St Paul and those are faith, hope and love and the greatest of these is love. Carole & Geoff xxxx

  3. wilma0750 says:

    And so sumphy the story goes on how great would it be if the powers that be turn it into a best seller and ud be a bigger star than u allready are ,i daresay that thers probly some people out there that think maybe u shouldnt make ur life public but wot the hell hen if u didnt do it do nobody else would and i couldnt be more prouder off u an urs if i tried ,ive watched u getting more tired just last week or so , so hen am thinking its time for u to have some me time wi ur wee family and take the well earnd rest that u so deserve, the short film is really gd think it gets the message across hope a lot off good comes off it cos i know wot it cost u ,an urs xxxxxxx oh aye and ur poem really needs to be picked up as well its fabby luv u infinity xxxxxxx rhanna u are a mini version off ur mum in everyway from the inside oot luv u zillions beannie xxxxx

  4. annaw53 says:

    we will have amazing time on sunday n if i make it back in one piece we will have hours of fun talking n laughing about yet another great day together xxxxx

  5. Heather Buckel says:

    Hi Samantha and Rhanna, what wonderful poems, very much from the heart. Both brought a tear to my eye. Sounds like you had fun for Andy’s birthday. What a wonderful memory. Take care and all of you stay strong xxxxx

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